Hopefully I might not have to have RAI following my completion thyroidectomy at the end of this month. However I was wondering if there was any medication / supplements etc that I can take that would help to protect the rest of my body if I do have to have RAI.

I understand that RAI is only supposed to be absorbed by thyroid tissue but even so, it looks like you can get issues with salivary glands and there is a small chance of it triggering cancer elsewhere such as Leukemia and breast cancer.

7 Replies

I know when I had mine I was advised to take Sweedish Bitters from health food store (for sal glands) & I took a product called Transfer Factors Plus which is proven to up your immune system by over 400%! It's made from egg yolk & cow colostrum amoung other things!! It's really the bomb in cancer treatment !! Also take Selenium for your immune system too! The key to protecting our cells from further damage is to aid immune system as much as possible!! All the best xx

I see that there are a variety of makers for the Swedish Bitters, do you know if they are essentially all the same formula or where you recommended a particular brand?

Reallyfedup - when you say massive doses what are you thinking?

Melissa

3 years agoHidden

Hey

It's not true what they say about RAI, the biggest sites for iodine uptake in women are the breasts, the gut, and the ovaries (prostate in men) and RAI is radioactive iodine. I had stage one Papilliary thyroid cancer and I refused RAI after my TT - my best friend is a PHD cancer researcher and we pulled all the research together and there was NO EVIDENCE it would add anything to my life chances provided I remained TSH suppressed post surgery.

My cancer markers are monitored very closely (and yours will be too) so I can always change my mind if things look iffy. However the only real circumstance that I'd consider RAI is with an aggressive form of thyroid cancer that had a risk of spreading. Papilliary and follicular are usually encapsulated cancers.

Your post operative histolgy report will of course tell you what's what. When I told my endo I wasn't doing it he smiled and shrugged, and said no problem, in America you wouldn't even be offered it for this type of cancer. No sweat whatsoever! I barely think about it now ....

You will find lots of opinions about RAI, my opinion is don't do it unless your life absolutely depends upon it. Mind didn't so I said no.

Thanks for that post. i have been reading the latest research and it does seem that they have slightly relaxed the treatment protocol for Papilliary and Follicular thyroid cancer. My Endo actually said that she was there when the British Thyroid Association were reviewing the guidelines and the feel was that they had been over treating it. The guidelines do now say that for papilliary cancer smaller than 1cm, uni and multi focal, RAI is not recommended.

At the minute I have had one side removed and a lump 2.5 cm was removed and found to have papillliary thyroid cancer in it. However it did have a very large cystic component. It was encapsulated with a clear margin and no sign of invasion elsewhere. As it stands, my endo said I wouldn't need RAI BUT if they find more cancer on the other side of my thyroid following completion in a few weeks time, then It may be considered.

If they do find more cancer I'm hoping to ask if I can hold off RAI unless I get signs that it has returned elsewhere. I think that sounds reasonable but I shall see what she says. Does multi focal Papiliary suggest a more aggressive form of papilliary cancer? Does anyone know?

My endo also said that there was talk about changing the guidelines so that lumps up to 2cm were classed as potential for malignancy instead of the current 1cm.

Great info - thanks for sharing.

Melissa

( wisewoman42.tumblr.com - My hemithyroidectomy adventure blog)

3 years agoHidden

hi you are welcome. I think if you are not sure then you should take your time. It's a very individual decision. There's no reason why they can't monitor you closely (I was checked once a month to start with) and make a decision if you need to at a later date. The thing with RAI is once you've done it you can't undo it. Some people will tell you they breezed through it without a backward glance and others will tell you (and I know a few) that they never recovered - I have one friend who was desperate for kids and within two weeks of RAI was plunged into the menopause in her mid thirties and has had horrendous issues ever since. It's like chemo I think, if your life was on the line then you'd do it (or I would) but if there was another way you wouldn't put yourself through it.

Also, most thyroid patients are a bit wary of the BTA, they are the clinical group that set the treatment guidelines in the UK and most people on this forum are still sick because of them. A growing body of thyroid patients think that most endos are as helpful as a chocolate teapot and we get well in spite of and not because of them, so not all doctors are equal, and you want to make sure you've got a partnership with your doctor, that they will listen to SYMPTOMS and not just be obsessed with your blood results.

I had RAI after TT for a big growth 3 cm I think, remember I was told to suck lemon sweets after 12/24 hrs to move saliva through glands. I have had no problems whatsoever following treatment - apart from trying to get thyroxine levels right - this has taken about 2 years!